We had a family dinner recently. After the kids had gone to bed, the adults got to chatting. Someone brought up the topic of my son and his T1D. We mentioned that he’d been having a hard time coping lately. As we talked about how he is getting increasingly frustrated by his diabetes, one relative spoke up and said, “Well, I’d just tell him to get over it.”
Get Over It
I was stunned. I had no response to that. Where to even begin?
Even if you’re new to the T1D life, you’ve probably encountered something similar. Someone who thinks you’re complaining about nothing, making mountains out of molehills.
People don’t understand type 1 diabetes. They think it’s “manageable”, that it’s no big deal, and that insulin is basically a cure.
I didn’t know what to say at the time.
If you find yourself agreeing with my relative about getting over it, or you know someone who would, let’s start with the basics.
Type 1 diabetes is not really a common disease. It accounts for about 5-10% of all people with diabetes. We’re in the minority.
The other 90%, mainly type 2 diabetes, is what people usually talk about.
It’s what the commercials are about. And the pamphlets in doctor’s offices. It’s what your friends, grandma’s neighbor has.
But that’s not the one I’m talking about.
Type 1 is autoimmune. It’s lifelong, it has no known cause or cure, and it’s NOT easy.
We didn’t ask for this or do anything to cause it.
Day to day with T1D
If you have type 1 diabetes, you have to inject insulin or you will die.
This is accomplished either by multiple injections per day (at least 4, sometimes up to 10 or 12), or via an insulin pump.
Even with a pump, you have to give insulin multiple times a day and insert the cannula under your skin every 2-3 days.
And the best part? It’s not a standard dosage.
You calculate your insulin dose based on what you’re eating: how many carbohydrates are in it, how much fat is in it, how much protein is in it, what your ICR (insulin to carb ratio) is for that time of day.
Then there’s your IOB (insulin on board, aka insulin that is currently active in your system), your activity level, and your ISF (insulin sensitivity factor) if your blood sugar is out of range.
And every time you want to eat anything, you have to check your blood sugar. Want to grab an apple? Check your blood sugar. Latte? Blood sugar. Sandwich? Blood sugar. Want a handful of chips at that party? … you get it.
If you only had to check your blood sugar when you were going to eat, that would be easier. But no…
You also have to check your blood sugar if you’re going to be active. Too high, activity can make it worse and land you in the hospital. Too low, activity could make you pass out or have a seizure. Just right and perfectly in the middle? Joke’s on us… either of the two scenarios I just mentioned could still happen during the activity.
Don’t forget to also check it if you’re going to drive, if you feel “off”, before you go to bed at night, in the middle of the night, more frequently during a growth spurt, an illness, or during your period… and so on.
Checking your blood sugar upwards of 12 times a day and giving multiple shots every day? For the rest of your life? No big deal, right?
The body and T1D
Blood sugar readings aren’t just numbers on a screen. There’s a reason they cause symptoms like lethargy, blurry vision, and seizures.
High blood sugar
Means there is too much glucose in your blood stream. Your blood is being gobbed down by sticky sugar molecules that have nowhere to go.
It wants to get into your cells to give them energy, but it’s locked out. It needs insulin to get in.
Without insulin, it just stays in the blood, building up and up and up. Which means your body has to find an energy source somewhere else. And it starts breaking down fat.
You’d think that would be good. Until you realize that burning fat creates a by-product called ketones.
When these bad boys build up in your system, they change the chemical balance in your blood.
Left untreated, this causes death.
Low blood sugar
As one could deduce, is too little glucose in your blood stream.
There is nothing to energize your body. Vital organs like the brain, kidneys, and heart are not getting the energy they need.
The body cannot function normally.
Big surprise that it causes headaches, fatigue, mood swings, blurry vision, trouble concentrating…
Left untreated, this causes seizures, coma, and death.
But people with T1D LOOK so healthy don’t they?
A lifetime of T1D
It’s not a “man cold”.
Not a one off like a headache or stubbed toe.
It’s not a minor inconvenience like having to take the dog for a walk when it’s pouring outside.
It’s ALL. THE. TIME.
Everything you do. Pokes, adding, guessing, planning. It never stops, and if you do, even in the wrong moment, it can cause permanent damage.
Multiple pokes and needle sticks every day… for the rest of your life.
Knowing (or guessing) the carb count of every bite of food that goes in your mouth and having to give yourself a life-sustaining hormone based on those numbers… for the rest of your life.
Worrying about blood sugars constantly, every day… for the rest of your life.
It’s more than most adults could handle.
But please, tell me again how my 8 year old (or anyone with T1D) should “get over it”.